Cirrhosis/Sprionolactone/testosterone

[WelshieM]

I know. Bit of an odd one!!!

Hi all!

I’d just be interested to know if anyone has had any (male) hormone issues surrounding cirrhosis and/or the use of Spironolactone. Or perhaps it’s just me?!

About a month before diagnosis, (I couldn’t see them because of my swollen belly), It felt like my testicles had shrunk slightly and (don’t shout at me) Dr Google said that it was normal for someone with liver disease. I was already aware that I had zero libido and thought that they were just trying to hibernate or something as they had nothing to do. I thought no more of it and didn’t really think about it again.

When diagnosed, I was given a high dosage of Spironolactone to take. Again, from what I read on the internet, I discovered that my large and sore moobs were one of the side effects of taking Spiro. I was also losing a lot of my body hair at the same time.

I was then quite fascinated/surprised to read that the drug was used in some counties for those transitioning M->F. I really do find all this stuff interesting to read!

Anyway, I was getting better and better, testicles still a bit on the small side, but no problem.

About a month after stopping Spiro I noticed that I was losing head hair. Went for an appt with a trichologist who said that it was highly likely that I’m the hair loss was down to stopping the medication and she was surprised that they still give it to men.

So, I had some magic (expensive ) shampoos and after a while my scalp improved and my hair was thickening nicely (not on the rest of the body though.

My health has continued so improve and due to the high amount of protein that I am consuming, I am the proud owner of some fairly big muscles like other blokes have, which is good.

I’m getting to the point now……

It’s coming up to a year since I last took Spiro and over the last 2 months, I have noticed a marked difference elsewhere on my body - hair coming back everywhere, testicles back to pretty much normal size and the libido is definitely back!

I’ve not done a huge amount of research but it really makes me wonder if Spiro almost strips you of testosterone in some way (feel free to pull a face if you think I’m talking nonsense) and whether it does take quite some time for your hormones to get back to normal? All I’ve read is that it can take a while for the sore/swollen moobs to get back to normal, but I’ve not really come across anything else regarding longer term issues or how long it really takes Spiro to leave your system.

Just interested if anyone has been through anything similar or if I’m just odd!

As you can tell I’m pretty laid back in talking about this kind of stuff and I hope nobody minds me bringing up the issues/questions. It might even help others who may be going through similar or wondering the same things who perhaps don’t feel comfortable in opening up about this.

Take care all x

[AyrshireK]

My hubby has never been on spiro and yet still has all the symptoms of the hormonal changes brought on by having cirrhosis. Loss of male pattern body hair, testicle shrinkage and zero libido or sexual functioning.

[MicheleG33 in reply to AyrshireK]

That's interesting Katie from the point of you of having a 19 year old with decomp cirrhosis. Mycophenolate is currently causing issues with diarrhoea but again they affect fertility themselves

[WelshieM in reply to AyrshireK]

Hi Katie!Thanks for the response!

I wasn’t really fully aware of the impact on hormones from cirrhosis itself.

Perhaps the Spiro just adds on extra side effects on top of cirrhosis symptoms.

It just makes me wonder then if improvement in those areas comes from improved health/liver function or/as well as stopping the medication.

Cheers for your input! 😊

[MicheleG33]

I have no idea about this but was equally fascinated by the use of Spiro for trans. I also find these things fascinating.But really I just replied to say thanks for being open and honest talking about this. My 19 year old recently diagnosed and not the best communicator! Meds affecting him atm too with gastro issues though. So worrying.

So thank you for your honest but very funny post. Laughing with you whilst I stink my coffee and I'm very glad you're back to 'normal'. 😁

[WelshieM in reply to MicheleG33]

2 for the price of 1 if you get a laugh out of it too! 😂Thanks for responding. If it can help in any way, that’s great! 😊

[user2021a]

I’m female so can’t comment on the male side but all I can say is that after being on spiro for 6 weeks have very sore boobs 😀.

[WelshieM in reply to user2021a]

Sorry to hear that!It may be worth asking if your medication can be changed to a different one. My consultant said that it could be changed to an alternative if the problem persisted!

[Kristian]

Its a bit of a mix Welshie, yes spironolactone does contribute to those effects but the cirrhosis itself is also a contributor. I cant remember the exact mechanism though unfortunately.

[WelshieM in reply to Kristian]

Yeah, thought that was likely to be the case!Cheers for the response! 😊

[bcsurfer]

I'm very pleased that you wrote this! I've been on spironolactone for a couple of years but medically my liver is functioning normally now, plus I've had surgery under a General Anaesthetic unrelated to liver problems and that went smooth as clockwork.

All this has led me to question if I should still be on spironolactone. My big concern being obvious man boobs which get very sore and massively diminished sex drive. Apparently spironolactone reduces testosterone by between 40-60% within days if not hours.

I'm going to speak to my gp or consultant but in the interim thoughts and the experience of others with similar dilemmas would be appreciated.

[WelshieM in reply to bcsurfer]

Hello!

Yes, definitely speak to your GP/consultant. Do you still have ascites? As soon as mine had gone, my consultant said to come off it. This was within 3 months. He said that if fluid did come back, and because of the fact that I had man boobs, he could prescribe alternative diuretic. Can’t remember the name though, but I’ll see if I can find the name of it!

You don’t really need to be in the Spironolactone for longer than you have to be!

[bcsurfer in reply to WelshieM]

Thanks so much for your reply! I've never had my meds reviewd in over 18 months so have been popping spironolactone at 100 mg a day! I'm fast considering bikini shopping for the summer! Ha!

Excellent advice and much appreciated!

[WelshieM in reply to bcsurfer]

Oh heck, get off the Spironolactone before you go out shopping!!!! Haha!

18 months does seem to be a very long time if you really dinky need to be on it. Definitely check with your GP/consultant!

Glad I could be of assistance!

[vinylcollector]

Too much protein can cause stomach cancer.

[Fibro2021 in reply to vinylcollector]

More importantly too much protein in diffuse liver disease can cause the onset or worsening of symptoms of hepatic encephalopathy due to increased levels of ammonia in the blood. There is no doubt that protein is essential in the diet for liver diseases. Therefore, it's better to discuss this issue with a nutrition expert who specializes in liver diseases.

[WelshieM in reply to Fibro2021]

It’s such a long time ago that I wrote this post that I’m only just re-reading it again. Perhaps I should have said ‘higher than before’., or not even mentioned it. I’m not packing it in like a weightlifter or anything! Everything is discussed with my dietician and I am eating correct amounts as part of a balanced and healthy diet.

[vinylcollector in reply to Fibro2021]

I was told very 3 x per day bowel movements clear amonia.

[Fibro2021 in reply to vinylcollector]

To be correct really regular stools 2 to 3 times a day helps lower ammonia to some extent . Lactulose is usually taken and its dose is adjusted depending on the regularity of the stool for this purpose.

[vinylcollector in reply to Fibro2021]

Hi fibre diet does the job nicely x 3.

[WelshieM in reply to vinylcollector]

I suppose too much of lots of things can cause lots of different things!